Genetic Testing and the Role of Nurse Navigators

January 2017 Vol 8, No 1

In the era of genomic medicine, individuals can go online and learn about their family history, and in the process, their risk for certain cancers. But even though genomic testing is becoming more widespread, it is not carried out as often as it should be, particularly among patients who have already been diagnosed with cancer. Nurse navigators can play an important role in raising awareness about the importance of hereditary testing and the identification of patients with genetic mutations, as these individuals often experience high rates of recurrence, according to Jennifer Klemp, PhD, MPH, MA.

Genomic medicine involves using genomic information about an individual as part of their clinical care, resulting in earlier detection of genetic predisposition to disease. It has been shown to improve the diagnosis of disease as well as the prediction of drug efficacy and toxicity.

“It’s really disappointing to see some of the ASCO data showing how poorly we’re all doing at taking a comprehensive family history,” said Dr Klemp, Associate Professor in the Department of Medicine at the University of Kansas Medical Center, and Director of Cancer Survivorship at the University of Kansas Cancer Center. “We may take it once, but we’re not taking it in follow-up, and that’s going to impact patients’ risk.

Since patients have changes in their personal family history, keeping up with those changes is crucial to the survivorship care plan and to ongoing care. And since guidelines change as well, a patient who didn’t qualify for genetic testing a few years ago could qualify now, so it’s vital to capture those patients, she said. “Now we have the opportunity to test a triple-negative breast cancer patient under the age of 60 regardless of her family history,” she explained at the Academy of Oncology Nurse & Patient Navigators 7th Annual Navigation & Survivorship Conference. “Maybe you had a 57-year-old triple-negative patient diagnosed 4 years ago and she didn’t qualify, but today she does.”

Approximately 40% of breast cancer patients and 100% of ovarian cancer patients now qualify for hereditary cancer testing. Dr Klemp said she occasionally gets pushback from gynecologic oncologists about performing these tests, but she called these barriers “unacceptable,” noting that many of those patients will drop off if they’re not tested right away.

“The worst thing you can hear is that a breast clinic doesn’t want to deal with risk for colon cancer,” she said. “But you’d better understand that in a breast clinic, you’re already dealing with patients at high risk for colon cancer.”

Identifying patients who do not follow up on a referral for testing exposes barriers in need of attention. “This is called the ‘drop rate,’” she added, “and it’s an informative piece that should pivot your behavior.” The average drop rate is over 50%, meaning more than 50% of patients referred for testing are not following through, and as a result their risk is not stratified.

Understanding a patient’s true magnitude of risk is fundamental to good patient care, and as treatment choices become more influenced by genetic information, that understanding will continue to become more paramount. She stressed the importance of integrating hereditary testing into the clinical workflow. “If it becomes part of a patient’s initial checklist, it will be more likely to get done,” she said. “Those processes require us to modify, educate, and facilitate the ability for these patients to be identified and tested.”

Genetic testing feeds into quality improvement objectives as well as clinical and business metrics. In other words, genetic testing isn’t just valuable to patients; it’s a moneymaker for facilities. Once a testing process is implemented in a facility, the return on investment can be seen in just 1 patient. “If you want to demonstrate value, genetics is one of the easiest places to do it,” she said. But as more facilities integrate genetics into the role of the navigator, the shortage of genetic experts is becoming more apparent, underlining the need for expansion in the field.

Red Flags for Patients

Michelle Weaver Knowles, RN, MBA, Breast Health Navigator at Community Medical Center in Missoula, MT, brought her passion to the conversation and told the audience to get out in their communities and dispel the commonly held misconceptions about genetic testing. After losing her sister to breast cancer at age 33 years, Ms Weaver Knowles was diagnosed with breast cancer at age 38 years. She learned with her own diagnosis that her family carries a BRCA1 mutation, so identifying and educating patients and their families who carry genetic mutations became her passion.

Red flags for a patient include a cancer diagnosis before the age of 50 years, unusual/rare cancer (triple-negative breast cancer, male breast cancer, ovarian or pancreatic cancers), 2 or more individuals in the family with cancer, anyone diagnosed with cancer more than 1 time, and any family member with a known genetic mutation. If a patient meets any of these criteria, she strongly recommends they be referred for testing.

She adamantly encourages all of her patients to undergo genetic testing, especially with the influx of new, targeted therapies. She informs her patients that the information yielded from the test isn’t just for them, as it will benefit their entire family. “The decisions they make in the beginning of their treatment are going to affect them for the rest of their lives,” she said. “Teach them and be their advocate to ensure they have an excellent quality of life.”

Nurses might meet with some resistance from genetic counselors, but collaboration will lead to better patient outcomes because nurses can assist in testing and follow-up, she noted. “Nurses in genetics is kind of a new thing; we’re intruding on their territory,” she said. “But pretty soon I think they’re going to need us just as much as we need them, because we know the medication part.” She also encourages cooperation with primary care providers and imaging/endoscopy centers for referral of high-risk patients.

According to Ms Weaver Knowles, navigators should know the high-risk criteria and should be taking a 3-generation family history from their patients. They should advocate for patients with any of the red flags, so that they receive education and testing if appropriate, particularly if the patient has recently been diagnosed with a related cancer. This knowledge not only helps dictate their treatment plan but can prevent affected family members from getting cancer.

She said that patients with nurse navigators during a breast health or cancer workup will have greater satisfaction with care, compliance, and education, and will have more timely referrals, adding that “when patients are educated, we can have more previvors.”

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Last modified: November 15, 2022

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